PSC newly diagnosed...have some questions

Hi...welcome to the UC forum!

I have PSC (and/or possibly PBC primary biliary cirrhosis..visually it's PSC, blood testing leans towards PBC ). Totally sucks you've been recently diagnosed...my sympathies. 

Did the doc at lease put you on URSO?

I don't have many symptoms as of yet....the only suspicion was because of increased liver enzymes and more nausea than usual. Interestingly, my UC symptoms were well controlled at that time.

I refused the ERCP based on a small bit of information that the possible side effects of triggering the disease into an active state as well as pancreatitis (I have enough to deal with) so waited until a much less invasive test became available.

What were the initial reasons you had the ERCP...was it because of other symptoms or just enzyme levels?

Are you male or female?

I don't know how long the pain will continue from the ERCP. I'd assume a week since you did have work done to open a duct....owwwwie!
Did the doc suggest you call if you have any other symptoms or to go to the hospital if necessary?

What meds are you on for CD? Is your CD in your colon or elsewhere?

From some of the info I've read...they don't know whether the PSC comes first or the IBD....but there are definitely varied ideas as to the cause.
Some even suspect that other autoimmune disease such as Sjogren's could play a part in the disease.

Yes, it's very depressing...I cried for 3 weeks while reading the info I had gotten from a great source. I didn't have the internet then.

My thoughts are that having one's other diseases under control is helpful in the progression. Did the doc say your PSC was in an active state with a lot of beading of the ducts?

The liver transplant is a life extender...it's been proven that the new liver will eventually get PSC, even if its original owner didn't have any autoimmune disease...interesting.

There is a site you should visit.... http://pscpartners.org/  I've never posted on it, but others from here with UC have.  I have, however, read a lot of the info.

Just an interesting tidbit...some who have come here were originally diagnosed with PSC, then UC.  I guess it depends on what's active at what time and what can bring the other one out.

I don't know if age of diagnosis has anything to do with disease activity.

I would suggest you NOT drink other than a very small amount here and there.  

I did take Milk Thistle for a while...but quit.   One less thing to take.

I've added a fibre supplement in the hopes of keeping the liver fats in control.

I've read that drinking coffee is good for the liver...I do drink coffee.

Oh, how are your cholesterol levels?  Mine are on the higher side...another side effect of having PSC.  I'm not on any statins...want to avoid them.

I don't have much more to add at this time.  Definitely do a search for PSC message boards.  I haven't in a while, but you might find something.

Hope your pain subsides soon from the procedure.

quincy

WOW! this is what I was looking for and I have it spades...to answer some questions:
--I will be starting on Urso soon. A different doc did the ERCP than my usual GI.
--I've been restricting alcohol for a while now. It doesn't seem to taste right and it hurts my side (know this before the ERCP).
--Hmm how did I know there was issues. Well I've been feeling pain/pressure right where the liver should be. A couple times, I woke up in the middle of the night, all yellow, but it went away. I went sure I was outside in the sun. So the doc's took lots of images/ CT, ultrasounds, MRCP, they all stated that I didn't have gall stones, that the my bile ducts were qutie large.

--Cholesterol? They have been high most of my life, even during my super good/lean diet.

--I guess this is one of those rare things. It's pretty rare for IBD as a whole (1-4%), but even rarer in crohn's patients. Oh and I'm female too. PSC has a 2 to one edge for liking men.

Well thanks...you have given me a lot to think about...but one quick question, have either of you been on the transplant list? When do you need it? I saw on a older post that this guy was on the list right at diagnosis....guess I'm still a bit terrified. Thank you both for you help

Shadam....the site is http://pscpartners.org/

q

Thanks Quincy & Shadam on the info. hmmm, my crohn's, mostly in the colon/anal area with lots of problems due to proctitis. Oh, and I have it in the stomach and mouth too. There doesn't seem to be any indication of small intestine involvement. Weird, huh? Yuppers, I'm one of those zebras.

Pain was starting to subside, but WHAMMO, it hit bad this evening. Can totally feel where the catheter was (they did a catheter dilation). Not sure what I did differently.

BTW, it was the pain (and swelling too) that told me something was off on my liver (can't forget the white/grey poo too). My GI then scheduled a CT, which showed enlargement of liver & bile duct, then I had an ultrasound (looking for stones n such). Then I got a MRCP. Waited another month for a CT with differing kinds of dyes...Still no smoking gun so back to ultrasound...nothing...then lipases went through the roof and the Doc wanted a better understand of what was going on, hence the ERCP with dilation of the bile duct.,

Shadam, I hope you can get some relief for you itching soon...

Quincy, I take many of the same meds as you some different too: asacol, bentyl, phenergan, Cimzia, prednisone (which haven't been able to come off of for 2+ years.), prevacid, calcium, multivitamins, zinc, sulfasalazine

So how did the Urso make you feel?

Good grief...I see I didn't even answer BU's questions in his/her last post. apologies.

soc222....70 - 80% with no recurring PSC as per your specialist(although could eventually end up with it since it wasn't stated within what time period after transplant).....was this a combo of UC/CD patients or non-UC/CD patients?

20 - 30% may seem low, but it's not a guarantee one would or wouldn't have recurrence. Maybe, however, the meds involved after transplant might have a hand in the process as well as if URSO is still used, etc.

No guarantees, but definitely a life extender with better quality of life and hopes it doesn't reoccur.

q